Reframing the endometriosis ‘diagnostic problem’…
Note: Endometriosis (pronounced en-doh-mee-tree-oh-sis) is the name given to the condition where cells like the ones in the lining of the womb (uterus) are found elsewhere in the body. Each month these cells react in the same way to those in the womb, building up and then breaking down and bleeding. Unlike the cells in the womb that leave the body as a period, this blood has no way to escape. As a result, ‘adhesions’ (tissue growths) can form around the body, especially in the abdominal cavity and between organs, causing irreparable damage and severe menstrual pain.
I was recently contacted by a group of students competing in an international competition to ‘solve real-world problems through synthetic biology, engineering, and community effort’ [1]. They are trying to invent a new non-invasive biological test for endometriosis. In fact, over the past few years, the search for a biomarker/ non-invasive test has become somewhat of a ‘Holy Grail’ within endometriosis research, although so far, nobody has managed to create a reliably accurate process or product [2]. As a result, ‘laparoscopy’ (keyhole surgery) remains the only clinically validated method of diagnosis [2] (and curative treatment, if all the endometrial tissue is located and able to be removed at the same time)…
Of course, this is an excellent and worthwhile student project… However, I’m not convinced that the lack of a reliable endometriosis biomarker test is actually the main problem faced by those who seek a diagnosis. Until a cure or more effective treatment option is available, to my mind, the biggest issue relates to clinicians not taking people’s experiences of severe menstrual pain seriously, and failing to provide patients with evidenced-based information about how best to manage their condition before it gets so bad that it requires surgery.
First of all, period pain should not be regularly severe and debilitating [3]. If it is, in nearly every case there will be an underlying health issue- it is certainly not ‘normal’ period pain [3]. Once fibroids and other physiological abnormalities have been ruled out (by ultrasound/ pelvic examination), and if anti-inflammatory medications (ibuprofen/ naproxen) do not seem to significantly alleviate the pain, then I (and the American College of Obstetrics & Gynaecology) would suggest that the individual probably has endometriosis (or perhaps a variant known as adenomysosis) [3] — especially if they describe the pain as hot, like fire, or fireworks, or shooting, stabbing, cutting like knives, or razor wire [4]. It’s really that simple.
So, the big question is why can it take up to eleven years to receive a diagnosis of endometriosis (with an average delay of 6.7 years) [5]?
Perhaps medicine wants a biomarker test because it doesn’t trust people not to exaggerate their descriptions of period pain (even though studies show that they don’t [5])? Patients might also want a test to prove (to themselves and others) that their pain is REAL and they are not making it up after years of familial/ clinical disbelief or ineffectual treatment?
I would argue that if someone has bothered to seek medical treatment and describes regularly excruciating menstrual pain — that should be enough for a physical examination, ruling out of other physiological issues, then for preventative treatment to begin with a ‘provisional’ diagnosis of suspected endometriosis- especially since such treatment is not at all harmful in most instances [6].
So, then it comes down to symptom management. The main thing is to prevent harm. Adhesions can form if endometriosis is left untreated, and these are the biggest risk to the long term health of patients. Anti-inflammatory painkillers may help with the pain but cannot prevent the creation of adhesions. The only way to do so is to stop menstruation, since it is only during the period that the endometrial tissue, wherever it is in the body, secretes tissue [3]. The good news is that we can already do this- usually through the use of an IUS (intra-uterine system) like Mirena/ Skyla or hormonal injections/ implants. Many people prefer the IUS- since it has fewer side-effects and it can last up to 5 years at a time.
Time should be taken to discuss this ‘preventative treatment’ rationale with the patient. Using hormonal medication or devices is not a shameful, or otherwise ‘unnatural’ thing to do- but there is a lot of anti-pill sentiment out there at the moment [7]. Of course, it is also important to explain the potential side-effects of all medications. Patients may also be resistant to stopping their periods, since they are connected to societal constructions of ‘womanhood’ and fertility. Some people may also internalise the sexist idea that severe female-pain is somehow ‘natural’ and to be endured without medical intervention [8].
This makes it even more important to describe what endometriosis-related adhesions are, and why it is important to prevent them. Reassure the patient that hormonal medications/ devices do not have any long term impact on fertility [9] (again, contrary to anti-pill propaganda [7]) and perhaps explain that if the individual is ready to start trying to conceive, to schedule an appointment to discuss the removal of the IUS (if required) and appropriate painkiller usage during the conception process.
Preventative treatment can be implemented without any need for a ‘biomarker test’ for endometriosis, and could potentially reduce the amount of pain, irreparable damage, serious health risks associated with surgery, healthcare costs, and misery caused by unnecessarily delayed diagnoses. YIPPEE!
Now we just need to find the exact biological and/ or environmental cause(s) of endometriosis and a better way to remove or inactivate endometrial tissue that lies outside of the womb…
Please cite my work in publications, lessons, or presentations as:
King, S (2020) ‘Reframing the endometriosis ‘diagnostic problem’…’ Menstrual Matters https://www.menstrual-matters.com/blog/reframe-endo/ retrieved on [insert date accessed]
References:
[1] If you are interested, the competition is called ‘iGEM’- https://www.igem.org/Competition
[2] See these two excellent systematic reviews of non-invasive endometriosis tests- Agrawal S, Tapmeier T, Rahmioglu N, Kirtley S, Zondervan K, Becker C. The miRNA Mirage: How Close Are We to Finding a Non-Invasive Diagnostic Biomarker in Endometriosis? A Systematic Review. Int J Mol Sci. 2018;19(2):599. Published 2018 Feb 17. doi:10.3390/ijms19020599
Nisenblat V, Bossuyt PM, Shaikh R, et al. Blood biomarkers for the non-invasive diagnosis of endometriosis. Cochrane Database Syst Rev. 2016;2016(5):CD012179. Published 2016 May 1. doi:10.1002/14651858.CD012179
[3] The ACOG guidelines on the diagnosis of endometriosis in adolescents conclude that if pain is regularly debilitating and does not respond to anti-inflammatory medications (once other physiological conditions have been ruled out), then it is safe (and typically accurate) to make a provisional diagnosis of endometriosis- ACOG Committee Opinion №760: Dysmenorrhea and Endometriosis in the Adolescent. Obstet Gynecol. 2018;132(6):e249-e258. doi:10.1097/AOG.0000000000002978
[4] Interestingly, such descriptions of endometriosis pain are fairly consistent across cultures and even in historical accounts of severe period pain! I will try and dig out some of the published sources I have read and share them here soon…
[5] The wait time may have reduced since this study was published thanks to greater patient and clinical awareness of the condition, but it can still take years… Gunhild Kalleberg Husby, Ragnhild Skipnes Haugen & Mette Haase Moen Diagnostic delay in women with pain and endometriosis, Acta Obstetricia et Gynecologica Scandinavica, 82:7, 649–653, DOI: 10.1080/j.1600–0412.2003.00168.x
[6] Obviously, all medications can cause unwanted, and sometimes even severe, side-effects. However, the vast majority of users do not experience these problems. It really is worth trying medication options if you experience severe pain, your quality of life is important. You can always stop them and seek alternative treatment options if they are not for you, for whatever reason.
[7] I am not a fan of the blanket prescription of hormonal pills for any and every gynaecological complaint, or for normal experiences such as irregular cycles in the first few years of menstruation. However, hormonal medications remain extremely effective and liberating for millions of people who menstruate around the world. They have had a greater impact on gender equality than any other technology or rights-based movement. So while it is cool to think critically about their usage, it is not cool to write them all off as inherently ‘bad’ or ‘dangerous’. A minority of users can experience severe side-effects from these medications/ devices (as is the case for all medications) but most people do not. As long as the patient is told about these risks and can thus make an informed decision about treatment options, that’s what is most important. In the case of endometriosis, they are one of the best options out there. I’ve recently spotted loads of ‘anti-pill’ memes and myths- ‘the pill makes you infertile’- nope, it doesn’t — the hormones do not accumulate in the body (why you have to take them everyday or they secrete a tiny amount each day) — they prevent pregnancy only while you take the medication properly- conception rate return to normal within a few months to a year of stopping taking the pill. ‘The pill shrinks your clitoris’- nope, it doesn’t- oestrogen is actually a growth hormone. ‘The pill makes you enter early menopause’- nope, it doesn’t- the combined pill contains oestrogen at a relatively higher level than usual- which is basically the opposite of menopause. Progestin only pills do not eliminate natural levels of oestrogen, so again, you don’t go into a menopause-like state with them, either. I could go on… Many of these campaigns are funded by anti-reproductive rights (for women, anyway!) groups, so please don’t share this stuff.
[8] A great article on this phenomenon is- Hoffmann, D. E., & Tarzian, A. J. (2001). The Girl Who Cried Pain: A Bias against Women in the Treatment of Pain. The Journal of Law, Medicine & Ethics, 28(4_suppl), 13–27. https://doi.org/10.1111/j.1748-720X.2001.tb00037.x
[9] Don’t just take my word for it- here’s a paper all about how more people believe in these contraceptive fertility risk myths these days- Landersoe SK, Petersen KB, Vassard D, et al. Concerns on future fertility among users and past-users of combined oral contraceptives: a questionnaire survey. Eur J Contracept Reprod Health Care. 2019;24(5):347–355. doi:10.1080/13625187.2019.1639659
and a couple of high quality studies that tested fertility after pill usage (and found no long-term impact);
Barnhart K, Mirkin S, Grubb G, et al. Return to fertility after cessation of a continuous oral contraceptive. Fertil Steril. 2009;91: 1654–1656.
Mikkelsen EM, Riis AH, Wise LA, et al. Pre-gravid oral contraceptive use and time to pregnancy: a Danish prospective cohort study. Hum Reprod. 2013;28:1398–1405
Originally published at https://www.menstrual-matters.com on July 15, 2020.
